If you've enrolled your loved one in the North American SUDEP Registry, we encourage you to share his or her story here.
We ask that you please limit your submission to 2,000 characters and email it along with a photo to the NASR Coordinator: mailto:info@sudepregistry.org.
Jack Feistel, age 6
Jack Henry Feistel was born on April 29, 2013. We fell in love instantly with our beautiful baby boy with soft brown curls and long eyelashes. Jack failed the newborn hearing screening and within the next few weeks we received a diagnosis of moderate to severe bilateral sensorineural hearing loss which started our journey with disability. After a year of testing and specialists, we learned that Jack had congenital CMV which was the cause of his epilepsy, cerebral palsy and deafness. His first seizure occurred right after he turned 3 years old. We were waiting in line for a ride at Disneyland when he started convulsing. We went through so many rounds of different seizure meds, constantly trying to find the right cocktail. At the worst of times he would have multiple partial seizures a day. Sometimes he would have tonic clonic seizures that would require Diastat. Despite all of these challenges, Jack was the light of our life. He was pure joy and his smile could melt anyone. He loved his family, friends, school, traveling and adventures. His favorite hobby was horseback riding. Jack loved getting to ride his favorite horse Prince Charming every Saturday morning. Jack lived a very full life and we always did our best to allow him to see the world. On February 8th, 2020, while we were on vacation, I went to check on Jack and found him face down in his bed. When I turned him over I noticed he wasn't breathing. Thankfully our best friend who is a nurse was with us and immediately started doing CPR. We called 911 but the paramedics could never get Jack's heart to restart. We were crushed. The emergency room doctor told us Jack died of a seizure in his sleep - SUDEP. Jack's death was totally unexpected. We had never heard of SUDEP and didn't know that he could just slip away in the night like that. Especially because his seizures were under control at the time and we were hyper diligent about making sure he got all his meds. Finding your child dead is a waking nightmare - a tragedy that SUDEP families have to go through. We hope by getting his story out and helping spread awareness we can shine a light on this condition that is still not understood. Jack we love you and miss you so much.
Ryan Ariff, 34
Son, Brother, Father, and Husband; At age 34, Ryan left this earth survived by his mother Gene, father Stephen, stepdad George Scanlin, brother Justin, wife Moriya and his two children, Sebastian 5 years of age and Olivia 8 years of age.
RYANS FAMILY Ryans story of building a family began in 2004, when he met his wife Moriya in a local grocery store. Three years later Moriya and Ryan got married on September 5th, 2007. Three years into marriage Moriya and Ryan welcomed their first bundle of joy into the world, Olivia Ariff. Two years following Olivia’s birth, the happy family welcomed their second child Sebastian in 2012. The Ariff family bought a home in 2014 which allowed them to be within walking distance to the children’s local school.
RYANS LIFE Ryan enjoyed many things in this life. His favorite movies were Batman and Deadpool. He enjoyed, like any southern raise man, watching football, video games, and listening to music. Ryan had many accomplishments while he lived. Apart from celebrating a 10 year anniversary with the employment of Starbucks, Ryans dedication to education and awareness on epilepsy was his life's’ passion. Ryan also believed firmly in spreading awareness about his epilepsy throughout his life, which showed in various ways. With his dedicated and devoted wife by his side, the two started a grassroots movement known as Epilepsy Awareness Mississippi Gulf Coast in April of 2013. Through this grassroots movement, Moriya and Ryan raised money to bring about awareness for epilepsy and seizures. In addition, they sought to help other individuals who lived locally who might be experiencing the nightmare that they had seemed to be living. In the last couple years of his life on earth he approached the Epilepsy Foundation of Mississippi about partnering to bring about change on a bigger scale to the Mississippi Gulf Coast. It is through this cultivated friendship and relationship that Ryan and Moriya began to work with the foundation in different ways to help others who faced uncontrolled seizures.
RYANS EPILEPSY Ryan had always had seizures throughout his childhood but it wasn't until January 2005 that he received an official diagnosis of juvenile epilepsy. In 2014, Ryan was diagnosed with refractory epilepsy. It is in 2014 that Ryan and Moriya sought relief by agreeing to undergo surgery in order to have a VNS implanted. The implant seemed to work but only temporarily. In 2016, the VNS therapy seemed to no longer have effect on Ryans seizures. With his seizures worsening and becoming more challenging for the Ariff family, Ryan later received the diagnosis of depression and anxiety as well in 2016. From there Ryan and Moriya battled his uncontrolled seizures until his restful peace in 2018. Peaks and valleys were present in the Ariffs lives as lifestyle adjustments had to be made as Ryans condition would gradually worsen. Through the hardships of Ryans condition, Moriya and Ryan began to be active within the Epilepsy Foundation of Mississippi. Ryan and Moriya had just started to receive some answers right before his passing. A week before Ryan had passed, he had received a diagnosis of primary generalized epilepsy and a somatoform disorder. Ryan left this earth in the early morning hours on July 4th, 2018. Since his passing his wife agreed to donating a portion of his brain to the SUDEP Institute in hopes in aiding research. Ryans wife Moriya continues to advocate for her husband. Her passion and eagerness to educate others on epilepsy and now SUDEP is stronger than ever. Her advocacy in education on epilepsy and SUDEP breathes life and memory into her late husband in efforts to honor his life here on earth.
Chelsea Linette Wilson, 27
My beautiful, unforgettable Chelsea was one of 3 children and our only girl, a middle child. She became a victim of SUDEP on September 24, 2013, after being diagnosed with a seizure disorder, nocturnal tonic-clonic generalized seizures (“grand mal”) at the age of 19 out of nowhere. The average age of death for SUDEP victims is 26. Friends and family were in absolute disbelief. I knew my life was over also because I would never truly enjoy another day without her. She lived 11 days after her 27th birthday. SUDEP was something I had never heard about. After diagnosis and through the next eight years, 8 neurologists failed her because they couldn’t be bothered with taking the time to educate a high risk patient about SUDEP. I firmly believe she would be alive today had we known about any number of preventive measures, #1 being that she should never have been living in a downstairs room alone because no one would have been able to hear or help her, but neither I or Chelsea had any idea this was so very dangerous. I read stories about neurologists telling parents/patients that night-time seizures were actually safer since the person would be at low risk of injury! NOT TRUE! The majority of SUDEP victims are found face down in bed, having had a seizure. She was essentially sacrificed because educating her would take too much time, and her doctors just didn’t care enough to take the time, being utterly indifferent.
Surprisingly, when she was first seen she was very honest with her first 3 doctors about her frequent heavy drinking. Unfortunately, her father and many extended family members on his side of the family were also. She also admitted to staying up late, not getting enough sleep, and “forgetting” to take her medication. This was true both in Richmond, Bristol and in Charlottesville. UVA didn’t feel the need to educate her even though she told her doctor(s) that she had estimated having had a total of ~30 seizures!!!!!! THIS IS THE REASON ALL PATIENTS SHOULD BE PROVIDED SUDEP EDUCATION. IT SHOULD NEVER BE ASSUMED THAT EVERYTHING THE PATIENT IS TELLING YOU IS TRUE, especially if they are young!!! I knew none of these things until after she died and I asked for her medical records…….I never knew anything about the frequency of her seizures and will never know but I believe she had many. When a patient is a teenager or young adult who has generalized tonic clonic seizures, ESPECIALLY NOCTURNAL, it is unimaginable that neurologists would not educate their patients about potentially life-saving education! This is negligence at the very least if not bordering criminal. Young people believe they are invincible and nothing bad will ever happen to them. Chelsea told me once that the Keppra made her feel less energetic, which was probably the reason for her noncompliance on a regular basis because she was so active. She never wanted to let me know of them because she knew I would be very upset. I spoke with her about status epilepticus because I wanted to make her believe something COULD happen to her, knowing nothing about SUDEP. I begged her to take her medicine and told her I could not live without her. I am sure she thought I was being hysterical but I was afraid because her friends let me know of several seizures. On one occasion, 911 was called but she refused to go with them. Two of the 8 neurologists asked about her sleep arrangements but neglected to say anything (she was a frequent stomach sleeper) so another opportunity to educate her was brushed aside. By this time and throughout the year she spent working in CA, I felt that she was having more seizures and just denying them gradually because she didn’t want to lose her license, and, NO ONE SEEMED TO CARE ANYWAY!!!! When she was in Argentina, I sent her about 3 months’ worth of medication in a box and when she was sitting on some stairs, someone stole the package. So she found a neurologist and was treated there.
At UVA, prior to her trips to Argentina) she would play with some of the members of the men’s soccer team and basketball teams. She managed to fracture a finger playing basketball and would come home with huge cleat marks and bruised legs but I know she enjoyed every minute of it! In her mind, she was indestructible. AGAIN, THIS IS YET ANOTHER REASON ALL PATIENTS MUST BE EDUCATED ABOUT SUDEP!!!!!
On a personal level, she was known to be exuberant yet kind to everyone. She always had a smile, kiss or hug for her friends. This is self-evident in her many pictures! She and her friends’ parents were on a first name basis and they treated her as one of their own. She loved her friends and family so much. I found a card in her wallet with a poem or quote about love.
After she was transferred to headquarters in Alexandria, a friend of hers who lived in either Alexandria or D.C. shared a funny story about the two being on the Metro. Neither had seats. Chelsea started doing pull-ups on the bars to “cheers and applause”!! She was just an adorable and fun girl that drew people to her. She was very active in her drama class and journalism. While working in Alexandria, she discovered that her employer had a unisex soccer team. One young male asked her if she was “any good.” Her reply was, “DUDE, I’m like Mia Hamm”!! She was playing for a total of 3 teams at the time of her death (indoor and outdoor).
She got to see many things in her short life including the Sistine Chapel, Iguazu Falls (largest falls in the world separating Argentina from Brazil) which she said was the most beautiful thing she had ever seen, and the Christ Statue in Rio when she surprised me with a 7-day trip to Brazil which was amazing. She made friends on three continents, visiting Uruguay, Argentina, Brazil, the UK, France and Italy. While at UVA, she wanted to go to Italy for a special 2-week acting program through UVA. This trip would have been prior to 2008. I recently heard from a young man who fell hard for her while she was there and had written a script loosely based on Chelsea. He is an actor and writer who talked about how much he loved her and how he fell in love with her eyes (she was voted girl with the prettiest eyes in middle school). They were dark blue-- like sapphires-- her birthstone. I’m so glad that I never said no if she wanted to go somewhere!
A former employer described her as “whip-smart” and her then-supervisor as the” best writer she had ever worked with” (she was going to be retiring soon). She was gregarious and outgoing but positively charming and for those who were lucky enough to meet her, she would leave a lasting impression. Someone she met briefly relayed how shocking it was to hear of her passing saying, “Her vitality and enthusiasm were unparalleled and that he would always remember (her) as ! a most wonderful exclamation point who really did just that, put an exclamation on the times spent in her company. An electric exclamation.” A former classmate posted that even though she did not know Chelsea very much she said Chelsea “was always kind to me.” Of course, I broke down when I saw these things and many other notes about her on Facebook.
The weekend following her birthday, she came down to celebrate her birthday with us and attend an annual “Rhythm and Roots” festival. I bought her some clothing and gave her several hundred dollars so she could pay bills or buy something nice for herself. The next day, on Sunday, she got up early and I didn’t get to say goodbye although we texted back and forth until Tuesday night when she died. Two or three weeks later, I opened my jewelry box and found all of the cash I gave her. She had snuck in my room and returned it. I also found a note saying, “Mother—I love you more than I have found a way to say to you” and signed it.
Many parents find comfort in donating their time to SUDEP awareness, contributing money to SUDEP research, etc. It has been almost 8 years now and I remain heartbroken and ANGRY because nothing has changed except that I’ve lost the most precious person I’ve ever known and my days are spent in misery. Children and young adults are continuing to die because research has shown only a fraction of neurologists take the time to explain SUDEP to their patients or caregivers. Ask yourself a simple question. Do you believe for one minute that if one of these neurologists had a child with nocturnal seizures, that the child wouldn’t have everything from anti-suffocation pillows, a special mattress, to continuous night-time monitoring able to emit an alarm and/or a seizure alert dog or watch which could detect abnormal movements? I think we all know the answer to that question.
At this point, I have nothing but contempt for neurologists as a whole. There has been much discussion in research papers and at conferences but NO action has been taken. It’s time for action and for neurologists do the right and moral thing and that is to start educating patients about SUDEP. A coworker and friend at NCMEC (National Center for Missing and Exploited Children) said in their memorial, which I attended, that, “My last time seeing Chelsea after saying goodbye, she came back up to me unexpectedly and wrapped herself around me as I was talking to someone else, and kissed the side of my face 10,000 times. That’s how I want to remember her, determined to give love.” It reminded me of the time she ran full tilt and jumped into my arms on her return trips to Argentina. She went on to eulogize Chelsea with a quotation which I put on her marker.
“I see myself as a huge fiery comet, a shooting star. Everyone stops, points up and gasps “Oh, look at that!” Then—whoosh, and I’m gone… and they’ll never see anything like it ever again—ever.”
Jim Morrison
Amy Glasgow, mother
Kate Dolan, age 30
Our 30-year-old only child, Kate, died in the fall of 2019. We were on vacation out of town and had been unable to reach her for several days, so we called the police for a welfare check. The next call we got was from the coroner. Kate was found face down in bed. She had near life-long intractable epilepsy, but led a full and independent life, living alone at the time in an apartment with her service dog Oscar. The coroner determined she died of SUDEP, with no evidence of having had a precipitating seizure.
Kate was our hero. She was the most positive person you could ever meet. Through her perseverance, she graduated from college and worked for five years in a job she loved – after school child care. She was very open about her epilepsy. She and Oscar drew attention wherever they went, and she was a great ambassador. Before Kate had her first seizure at age one, her father and I did not know anyone with epilepsy and had never seen a seizure close up. We were amazed by the number of people who would approach Kate to share that they had a loved one with epilepsy, or that they themselves had seizures. Kate was co-chair of an epilepsy support group and volunteered for Indiana Chapter events for the Epilepsy Foundation.
Kate never met a stranger. She loved eating out, Grub-Hub, Bath and Body Works, Yankee Candle, Victoria’s Secret, Portillo’s, laughing, righteous indignation, little kids, and all dogs. She had an amazing gift for selecting appropriate, beautiful, non-schmaltzy greeting cards. She loved her nightly Skyping with friends. She had a good sense of humor and great appreciation for beauty.
I was aware of SUDEP and the registry by reading the Epilepsy News weekly email from the Epilepsy Foundation and the free Brain and Life magazine. I did not know that biosamples could be donated to the registry. It was too late for Kate to donate by the time I thought to research SUDEP. I encourage families and doctors to talk about SUDEP risks and to think about donation in advance of the need, just like people sign up to be organ donors in advance, so families don’t have to process all this at the time of death.
-Rebecca Dolan, Kate’s mom
Luke Hunter Miller
Luke Miller was a bright light in the world. He was born on May 24, 1998 and brought joy and sunshine to all who knew him.
He grew up in Springfield, Missouri with his parents Mark and Kelly Miller and his younger brother Ethan. He loved playing outside as a kid and tried every sport. He finally found his sport in 8th grade when he fell in love with running. In his senior year of high school, he went on to achieve two third-place finishes at the state track meet in the mile and two-mile races. His other passion was telling stories, and he had a drive and enthusiasm to make movies. He was an active and healthy child and teenager.
He followed his passion for running to Western Colorado University in Gunnison, Colorado where he majored in communication with an emphasis in film. His goals were to win national championships in cross country and track and to become a filmmaker. He had a focus and energy that most people don’t have at his age. He would bypass parties and going out with friends to work on his goals or watch a film. As a true freshman, he was a varsity runner for the Western cross country team that finished fourth at the NCAA Division II National Championship.
During his second semester in college, in 2018, he suffered his first tonic-clonic seizure. He was rehabbing an injury in the training room at college when he had a seizure on the table. He underwent all of the necessary tests and visited a neurologist in Colorado. The diagnosis was it was just one seizure and to get enough rest and continue with regular activity.
He returned home in the summer of 2018 and started having seizure clusters every 7-8 weeks. We visited specialists in epilepsy and they prescribed medication, but no one could ever tell us why he developed epilepsy. Luke made the decision to stay home from college in the fall semester of his sophomore year so we could figure this out. He continued to train for running, took an online class and worked.
One day, he had a seizure early in the morning, he rested and then did his 12-mile training run the same day. He just was not going to give up or give in to this diagnosis.
All the doctors told us it was safe to send him back to school. He just needed to manage his epilepsy by taking his medications on time and getting enough rest. He was consistent in taking his medications and was such a healthy person. No one ever said he was in danger of dying because of epilepsy. No one ever mentioned SUDEP to us. Luke died on January 10, 2019 at his grandparents’ house in Denver, Colorado on his way back to college. He had a seizure in his sleep and did not wake up. His dad found him in the morning.
More than 600 people attended Luke’s memorial service and visitation. Friends and family all shared stories about Luke’s kindness and how he served as an inspiration. His untimely death has left a hole in his family, friends and community. The term “Live Like Luke” has taken hold with t-shirts and social media posts. Luke is gone but never forgotten.
Amanda Hendrickson, aged 24
Amanda "Mandy" Hendrickson was born in November 1994, in Denver, Colorado to loving parents, Derek [from New Jersey] and Marcia [from South Dakota]. She was bright, smart, and happy. She was joined in her journey when her sweet sister, Sammi in 1996. At birth, Mandy had very low APGAR scores, and was in ICU for a few days before she could come home. She had low muscle tone. Her developmental delays made it difficult for her to crawl and begin speaking. By the age of 5, Mandy was diagnosed with epilepsy, that started with eye rolling. Her speech therapist thought it was a sort of stutter or tic. She was a good student thanks to her early education from area preschools. Mandy found her love of horses when she got to ride "Buck" at horseback therapy. Derek and Marcia were divorced in 1999, but shared custody of the girls. Mandy's education continued in Highlands Ranch, Colorado.
At age 9, Mandy's epileptic seizures increased and the medications weren't sufficient to control her frequent petit mal seizures. The Children’s Hospital neurology Department in Denver said she was having 100’s of seizures per hour and were able to pinpoint the area of her brain they were radiating from. Mandy underwent brain surgery at the Minnesota Epilepsy Group in St. Paul, MN. That partial frontal lobectomy and corpus callosotomy surgery reduced her seizure activity by 75 percent. Mandy had a love of family get-togethers and swimming. She enjoyed family trips to the Rocky Mountains and Disney resorts in California and Florida. Mandy was an avid reader of animal and bird books and she memorized many statistics from those books. She was an excellent artist with markers and cutting out fine details of her work. She loved Pokemon, Star Wars, and playing her Playstation II video games and especially loved Sonic the Hedgehog and Kingdom Hearts. Mandy graduated high school on time with the support of the special education department. She enjoyed hiking trails with her sister and wildlife watching. Mandy started having grand mal seizures in middle school. In the end, epilepsy took its toll and she died while playing her favorite Sonic video game. It was determined that she died of "SUDEP." She believed in paying it forward and was an organ donor. Her brain was donated to the SUDEP Research program at NYU in an effort to help others. Mandy is deeply missed by all who knew her sweet smile, quick wit and giant hugs. She was always optimistic and her frequent saying was "This has been the Best Day of my Life!"
-Marcia Johnson, Amanda’s mother
Teddy Tsagaris, aged 28
Theodore Gregory Tsagaris was born and raised in Westchester, New York where he grew up to be a phenomenal young man. Teddy accomplished a lot in his short amount of time and touched many lives along the way. A lover of all sports, he grew up playing and coaching baseball where he learned hard work and motivation for greatness. From a young age it was apparent that he wanted to make a difference in the world and give back. After graduating from college with a degree in maritime shipping, Teddy decided after his first corporate job that he wanted a career that impacted lives in a more meaningful way. He was part of a search and rescue team in Houston where he relocated with his parents after college, and he was also a certified protection officer. At the time of his death, he had just been accepted as a candidate for the Houston Police Department.
It was in college 2010-2011 that he had his first nocturnal seizure, he was unsure of what it was at the time because it had been in his sleep. Teddy had sporadic nocturnal seizures infrequently for the next few years with over a year between each one. Our family never witnessed him having one and he did not remember or know he had them until seeing the residual effects the next morning (bitten tongue, sore muscles etc.). In August of 2015 he had his first witnessed grand mal nocturnal seizure which lead him to the ER. A CT scan showed a lesion in his right temporal lobe. He was told he had generalized epilepsy and was prescribed medication, the doctors did not seem to think the CT scan showing a lesion was pressing. He saw a couple of different neurologists over several months until one doctor finally did an MRI with contrast which showed the lesion to be a tumor, a growing pleomorphic xanthoastrocytoma that he likely had since childhood. Since the ER visit he was having nocturnal seizures more frequently, about every three months. Teddy had brain surgery in May 2016 which was successful with an impressive recovery of him up and walking within a few hours. The tumor was about the size and shape of a two-liter bottle cap. Over the next two years MRI’s all came back clean showing no tumor regrowth, but the surgery did not seem to help with the frequency of the nocturnal seizures.
Teddy did not let the seizures alter his life or prevent him from fulfilling his hopes and dreams. In the early hours of the morning on August 22, 2018 we lost Teddy to a seizure in his sleep. He is survived by parents Dean and Patti, and younger sister Alexia. He was the most positive, kind, and selfless person who gave the best bear hugs. He always saw the good in every situation with the glass always half full. He was a textbook example of how to treat others and had a heart of gold. We miss him every day.
Teddy’s case is a bit unique in that the astrocytoma caused the epilepsy, but there is no way to tell if removing the tumor hindered or helped because nocturnal seizure frequency increased post-surgery. After talking with the medical examiner, he explained that the damage had already been done to that area of the right temporal lobe because the tumor had been there for so long, but it was no question that it had to be removed. SUDEP was first mentioned by the medical examiner which led us here. SUDEP was not mentioned to Teddy or our family during his experience over the last few years. The biggest takeaway from Teddy’s story is that if a child or adult is showing potential residual effects of a nocturnal seizure, get it checked out right away and push doctors to give it their full attention. We are encouraging anyone who knows someone with epilepsy to share this information on SUDEP, and we hope that doctors will inform patients and families going forward.
- Dean and Patti Tsagaris (Teddy’s parents) and Alexia Tsagaris (Teddy’s sister)
—————————————————————————————————————
Jacob Toews, Aged 15
Our son, Jacob Wade came into our home as a 4 month old foster baby along with his older brother and sister. Close to a year and a half later we were able to adopt this sibling group and call them our own. He was the only ‘baby’ we had.
Jake, which is who he was to us and all his friends, was a self entertainer as a child and even into early teens. He was very inventive with the scraps and unwanted item here at home, like empty cardboard boxes, tin cans, etc. Often using them to make trailers for semi trucks that he would ‘drive’ when completed. We saw his love of drawing come to life as he used paper after paper to get just the right perspective of his trucks. One day he came to me and said, “See, I figured out how to make it look 3D!”
Somewhere between 1 1/1-2 years of age Jake began having absence seizures although at the time we were not aware of what was going on. At 12 he had his first grand mal when we finally started doctoring. We were never given a diagnosis on exactly where or what brought his seizures on other than they were generalized and localized in his brain. He tried numerous anti-seizure meds and they would work for a time then quit. He went through 2 video EEGs and MRIs with and without contrast, a hospital stay or two where he went through medication changes. Nothing we did seemed to control his grand mal seizures which were occurring on an average of one a week 2 days before he dead we had been to the neurologist and she told us that we were running out of options with medication. There were 2 things left that she suggested we could try yet—CBD oil and VNS.
He was 15 when he died. He was found in bed on the morning of Feb. 22, 2018, face down. By all appearances to us, his death was caused by some sort of seizure activity as his fingers on both hands were curled and his face was somewhat screwed up. We were told by officials they believe he passed away shortly after he went to sleep the night before.
Jake’s dreams for adulthood were big—wanting to be a volunteer fireman, and a pipeline welder, also having a job to one day support a wife!!
-Christy Toews (Jake’s mother)
——————————————————————————————————————--
Emily Redosh, Aged 28
Emily Redosh was born in Philadelphia in November, 1989. She moved to Denver with her parents when she was just shy of two. Emily’s passion, from a very early age, was dance. Emily began taking a “pre-ballet” class at her preschool in Denver, which grew into after school classes four days a week. After her sister Lauren was born and the family moved to Golden, she danced ballet until her death. Over the years, she danced almost every part in the Nutcracker, earning the coveted role of Clara when she was 15, and the Sugarplum Fairy upon her return from college.
Emily attended Lakewood High School and received a BS from the University of Arizona. While at U of A, she traded her pointe shoes for ballroom heels and won numerous medals for the U of A ballroom team at competitions around the country. After graduation in 2012, she balanced work at Colorado Physicians Health Program with her love of ballet and ballroom dance, along with a busy social schedule and her eagerness to travel the world. She even began to appreciate the Colorado mountains as she joined her dad to hike a couple of 14,000 foot mountains and accompanied her friends and family on hiking and camping trips.
Emily passed away suddenly on December 2, 2017 from SUDEP. She had been diagnosed with epilepsy at 7 years of age; her tonic clonic and absence seizures were generally well-controlled with medication, averaging one seizure per year when she was sleep deprived or missed a dose. She rarely spoke of her epilepsy, which was a bit disappointing to her neurologist father, as she was determined that it wouldn’t define her. She was a compassionate young woman who always had a kind word to say and an open and loving heart. Upon her death, her family asked that contributions be made in her memory to the Denver Ballet Guild, and to the Chelsea Hutchison Foundation, because of the work the organization does to raise awareness of SUDEP and to help families with members suffering from epilepsy. Emily’s family is honored to be able to pay Emily’s short life forward through participation in the SUDEP Registry. Emily would be deeply touched to know she has had some part in bringing comfort and peace of mind to those who also suffer from epilepsy. In that small way, Emily dances on.
Douglas Redosh (Emily's father)
——————————————————————————————————————--
Nicole Marie Orleans, Aged 25
My beautiful daughter, Nicole Marie Orleans, Passed away on September 1, 2017. She did not show up for work that day, and was found unresponsive in her apartment.
She began having “petit mal” seizures when she was in her teens. At one point, she told a doctor that she had been accidentally hit in the head with a heavy oak door when the person in front of her didn't realize that she was behind him. Her first “grand mal” seizure occurred the day after Christmas 2012. She was 21. We went to a series of visits at doctor's offices and hospitals, and she was put on Keppra and Topiramate. The combination was not working very well, so they switched her to Keppra and Vimpat. With that combination, she slept better, lost a significant amount of weight, and remained seizure-free for quite a while.
Nicole attended LVA as a Choir major. She had a beautiful voice! Once the seizures started, however, her tongue was damaged to the point that she had to give up hopes of a singing career. She instead wanted to get into the medical field, and was working for a health care company as a technical representative. The Vimpat was working great, however, her health plan at work would not cover the cost. The seizures became more frequent.
Nicole's friends had a memorial service for her, and her company planted a tree in her name, with a plaque, at the West Flamingo Park in Las Vegas. If anyone would like to learn more about Nicole, her Facebook page is a memorial to her now, and is public. She loved going on road trips, she was an avid Star Wars fan, she loved all living creatures, fish especially, and since her initials were NMO, her nickname was “Nemo”. Her friends knew they could always count on her, she was kind and generous, loving, understanding and supportive.
I was able to help the NASR retrieve samples of Nicole's brain tissue and blood left over from the autopsy. I hope it helps their research. I miss her terribly.
Lillian Orleans (mother)
——————————————————————————————————————--
Cole Stewart Brecheisen, Aged 18
Cole was the oldest of our three children. He was a very bright and inquisitive young man. He loved computers, driving and almost anything to do with cars and engines. He dreamed of designing car engines that would be faster. He had a wonderful and caring heart and would do anything for his friends or family. Cole was a high school senior in March 2016, when he had his first seizure at work. The emergency department at our hospital decided he had fainted. We knew this was not the case so we obtained the security camera footage, at his place of work, that showed him having the seizure. We took this to an Epileptologist and he diagnosed Cole with Localized Focal Motor Epilepsy. We were told that "there were far worse things in life" and that he would be just fine. Cole began taking Keppra immediately and seemed to be doing well. He said he felt strangely very often, but wasn't sure what it was. He also complained of poor memory. He was keenly aware of his mind and his body and the different feelings he was having. Things seemed to be improving, until late April when we awoke to him having another seizure. His medication was increased immediately and again he was doing well. He would have small breakthrough seizures, but they would not progress to a full seizure. He went seizure free for some time and went on a mission trip with our church to build homes in Piura, Peru in the beginning of July, 2016. Cole regained his ability to drive in late July and was thrilled. He spent the whole month of August driving as much as possible as well as beginning classes at the Community College near our home. He was terrified of having a seizure in front of someone so this limited what he did. He had a couple of larger breakthrough seizures and we told the Dr. about them. The Dr. seemed to think this was fine and he didn't need to increase medication unless they got worse.
On the morning of August 28, 2016 we went to wake our son and found him lying face down in his bed. SUDEP had claimed his life in the middle of the night and we hadn't known. If Cole had been told of the risks, he might have been more careful about his diet, sleep, and increasing medication. He may have been worried, but we will never know if it would have saved him or not. We enrolled him in NASR in the hopes that something can be learned from his case. Our lives are forever changed by the loss of our beloved son. We can only hope something can be done to prevent this from happening in the future.
TJ and Leigh Ann Brecheisen (Cole’s parents)
——————————————————————————————————————--
Janette Gable, Aged 18
It’s still unreal to me that my daughter who was diagnosed with epilepsy at the age of 10 passed away from SUDEP on November 13, 2016. We had celebrated her 18 th birthday just the month before.
I had stumbled across a short article about SUDEP two years prior during one of my many searches for any information relating to Janette’s intractable epilepsy. She was having more frequent seizures as the years went on and additional types of seizures started occurring.
I miss her sweet smile, her sense of humor and wit, her loving heart. Janette had goals she had set for herself and was accomplishing great things despite living with epilepsy. She was a senior in high school. A feat I admire in itself. The medications made it difficult for her to concentrate and caused a number of other learning challenges. She was ready to take on adulthood, independently. She got herself a part time job; she looked forward to her senior prom and graduation. She was considering moving from the east coast to Southern California, a place she truly loved. The vibe, the culture, the beaches, and the climate- she loved everything about it. Her family roots were in SoCal and she definitely felt right at home whenever we went to visit family and friends there. Janette was soft spoken with beautiful long dark hair and soulful brown eyes. She liked to draw, read, and she had a very soft spot for animals. She had a great laugh and the funniest sense of humor. She absolutely loved music and her baby nephew Joey. We spent a lot of our free time together, watching scary movies or grabbing coffee out to catch up with each other about our week. I was fortunate to have a teenage daughter who told me she loved me every single day. As her mother, her caretaker, and her best friend, I can’t begin to express the sorrow and heartache I live with every single day since I found her. SUDEP took my precious girl; I miss her every second of every day.
She is survived by her father John, who absolutely adored his only daughter. She is also survived by her brother Joseph and his wife Alyssa. There were many game nights, holidays, jokes, and love shared by them. Janette loved playing with her baby nephew, Joey, and reading Dr. Seuss books to him. My heart breaks for her sweet boyfriend Grady and her best friend Clementine.
I’m hoping my beautiful daughter’s short life was not in vain as I donated her tissues and samples to NASR. I have high hopes that they will find something that may help other patients or neurologists in any way possible. I can’t forget to acknowledge the Epilepsy Foundation of the Chesapeake Region. They were key in helping me with information, programs, and resources.
Please educate anyone you know who has any kind of seizure disorder about SUDEP. It’s unfortunate that SUDEP isn’t a standard conversation in the doctor’s office. Not many people realize that there is a very real risk that your child, spouse, sibling, grandparent, friend…can die from this.
Margaret Gable (Janette’s mom)
——————————————————————————————————————--
Shani Coleman, Aged 27
Shani Coleman was a unique young lady who did not allow epilepsy to stop her from living a full productive life. Shani suffered with seizures from adolescent until the age of 27 at which time Shani died due to a fatal seizure. Shani was able to overcome many personal challenges yet she met all of her challenges and endeavors with determination and courage. Shani was a perfectionist who gave one hundred percent to everything she was involved in. Shani had a kind kindred spirit she loved to laugh, have fun and help others. Shani was a beautiful young lady who was full of poise and understood what it meant to embrace life to the fullest. Shani loved to write creative poetry and prose, paint, as well as create collages and jewelry. Shani was an exemplary student who received several scholarship awards and graduated with Honors in June 2016 with her Bachelor’s Degree in Journalism and Communication from Baruch College. As a young woman she enjoyed working in the community garden, feeding the homeless, mentoring, and creating community murals like “The Vision of Growth.” Shani was also adventurous, her favorite shows were Seinfeld, Martin and Dog the Bounty Hunter. She loved to rollerblade, ride her bike, take walks on the Coney Island boardwalk to see the sunset & even flew an airplane under the guided instruction of a licensed pilot of course. Anyone who had the pleasure of knowing Shani was fortunate to know a very special young lady who exemplified what it means to be a committed loving trust worthy person. All of us who knew Shani miss her dearly. I would like to encourage other families of color to consider participating in research such as SUDEP, such research can only promote a positive outcome in the medical field as we use our collective efforts to investigate and share vital information that can help to prolong and save precious lives.
- Shari Robertson (Shani's mother)
——————————————————————————————————————--
Dean Geiser, Aged 63
At 63 years old Dean was a retired pharmacist who enjoyed reading, classic rock, and the Baltimore Ravens. He was a family man with two adult children who cherished him and a wife who adored him. His dry sense of humor was beloved by all.
He started experiencing nocturnal grand mal seizures at the age of 27, shortly before we were married. As a health care professional he did as much research as he could as to possible causes and treatments (this was prior to the internet!) and found there was very little information out there about his condition. After all, he was told repeatedly, this was a benign condition and the best kind of seizures to have since they didn’t affect his driving and he was in a safe place when they occurred - in bed. Over the years with medication he suffered a seizure only every 1-3 years. He took many tests but no one was ever able to determine a cause for his condition.
The night he passed all the health care professionals in our town were not sure what happened and labeled cardiopulmonary arrest due to arteriosclerotic disease as the cause of death, even though I clearly told them of the multiple clues of seizure activity. He also had no history of heart problems. It wasn’t until I did research on my own that I learned of SUDEP. No one had ever discussed the possibility of it beforehand with us. Dean had previously said he wanted his body donated to science upon his passing but had not as yet taken the steps to make that happen. He was cremated without an autopsy. I hope that by telling his story more people will become aware of SUDEP so that the scientific community can make progress on how to prevent it. Dean was unable to donate his tissue to be studied, which he would have gladly done - had he only known.
-Wife Cheryl Geiser
——————————————————————————————————————--
Michael Wellborn Thomas, aged 25
My only child, Mikey Wellborn Thomas, died Nov. 26, 2016, from sudep (sudden unexpected death of a person with epilepsy). While he lived with epilepsy for most of his life, it did not define him. He was an artist who painted every day. On his Twitter and Instagram accounts he told the world how much joy he got from creating art. In recent years his work progressed from working on canvases to working with other artists and photographers to paint on photos. People from around the world would send him their pictures for him to re-create as he saw fit.
Mikey loved his life, living in the Bucktown neighborhood of Chicago with four of his closest friends. “Chiller’s Paradise” was home to many a party, but now looks like an art gallery, with all its walls adorned with Mikey’s art.
As his mother, I never realized how friendly Mikey was. Most days he would come home from school, do some homework, go online for some video gaming and paint. He rarely socialized during most of high school. Yet, at his memorial, I met hundreds of people who were touched by his sweet life. Many of them had been his closest friends since middle school.
His kindness and friendship were evident in the people he touched after high school as well. Nearly every person he ever worked with came to his memorial to share a story about Mikey.
I remember one day when Mikey told me about some homeless people he passed while walking home from the hotel where he worked. He tried to save money, so he often walked home, even in the winter. He said he just couldn’t stand to see the suffering of a homeless man he often encountered, so he gave him his tip money, which was essentially all of his money. At least for one day, that person would suffer less. Mikey said he could always make more money later.
-Parents Janice Wellborn and Ross Thomas
——————————————————————————————————————--
Patrick Ring, aged 29
Pat was diagnosed with partial complex seizures at the age of 11. Most people in his high school, college, and later years did not know he had epilepsy, as it was not something he often talked about. Even though the heavy doses of medication made him lethargic and he required a lot of sleep, he did not let his seizures stop him from leading a full life.
He was an avid Bruce Springsteen and Phillies fan and loved fishing with his twin brother, bowling and spending time with friends and family. He worked for over 6 years at W.B. Mason and had been promoted to Customer Service Training Supervisor. He proposed to the love of his life, Tara, right before Christmas 2013. Pat was on top of the world – happier than he had ever been with a world of possibilities and a bright future ahead of him, until epilepsy took his life away so suddenly at the age of 29 on Thursday, February 6th, 2014. No doctor over the course of 16 years EVER mentioned that he could die from a seizure.
He was found unresponsive and alone on the floor in a conference room at his work, where he had just finished conducting a training webinar. His coworkers called 911 and began CPR but he died before the ambulance arrived. Upon his parents’ arrival at the hospital, his mother asked the ER doctor if he had a seizure and the doctor replied “no, you don’t die from epilepsy.” His family left the hospital not having any idea how he had died. The following day, the coroner informed his family that she believes it may be a case of SUDEP. SUDEP? What is SUDEP?!
The barrage of online searches for information about SUDEP opened up a world we previously knew nothing about. The anger and frustration that followed this earth shattering news fueled the creation of The Patrick Ring Foundation – something positive had to come out of something so senseless. We hope to honor him and his legacy by the positive work being done through a foundation in his name to raise awareness of Epilepsy & SUDEP.
-Jennifer Murphy (Pat’s sister) & Family
——————————————————————————————————————--
Lincoln Hendrickson, aged 3
Lincoln was born on December 20, 2010. He was born 4 lbs, 15 oz. His glucose level was a concern and he was brought to the NICU. 5 days later, he started to have seizures. The neurologist ordered a MRI which came back abnormal. Doctors believed Lincoln had suffered a loss of oxygen to the brain at some point in my pregnancy. We spent 21 days in the NICU. Lincoln was diagnosed with Spastic Quadriplegia Cerebral Palsy, Epilepsy, Cortical Vision Impairment (CVI) and developmental delays.
The first year and half of Lincoln’s life was a tough journey. He battled Infantile Spasms (a catastrophic childhood epilepsy), hypothyroidism, viral infections and countless modifications and trials of anti-seizure medications. We attended therapy sessions four times a week. Lincoln received Botox and Phenol Injections into his tight muscles. He saw his pediatrician and five specialty doctors. He was such a little warrior!
Throughout Lincoln's life, we participated in the Baby Steps 3K for Children’s NICU, The Epilepsy Stroll for the Epilepsy Foundation of MN, and the Pedal in Place Fundraiser for Cerebral Palsy and Gillette Speciality Healthcare. We come together as Team Linc to walk and raise money for these special programs.
Lincoln enjoyed strolling in his wheelchair down to the nearby pond to feed the ducks. He loved swimming, reading books, listening to country music, and taking naps on the couch with mom and dad. He loved preschool and interacting with his friends and teachers. He adored his cousins and neighbors. He always worked hard in therapy. He absolutely loved his adaptive bike. Lincoln went to heaven on August 21, 2014. He died peacefully in his sleep. It was a complete shock. He died of SUDEP – Sudden Unexpected Death in Epilepsy.
We did not hesitate to have Lincoln participate in a neuropathology examination through NASR. It was an important step for us to take to help those living with Epilepsy and to learn more about SUDEP. Lincoln would be proud.
Lincoln was an amazing boy. Our lives have been forever changed by our best boy. He was full of love, light, energy, happiness, and joy. His contagious laugh, huge smile, and funny snort will never be forgotten. We were so blessed to have him for 3 years, 8 months, and 1 day. We know Lincoln is in heaven. Our hearts still ache to have him here with us. If you would like to follow and read about Lincoln's journey, please visit his website at: http://www.caringbridge.org/visit/lincolnhendrickson.
–Melanie Hendrickson (Lincoln’s mother)
——————————————————————————————————————--
Hannah Dolera, aged 8
I was a single parent raising Hannah and she was the joy of my life. She was also my greatest teacher. This angel taught me about patience, compassion, empathy, about being thankful for what I have and not taking life for granted in her true Hannah way. Most of all she taught me about how to love unconditionally and the love for all humankind. I miss her so much, she was my only child. I feel that her gift to you will benefit your study and help the many children around the world who have suffered like her.
I belong to the non-profit Cornerstone Educational Preschool which two years ago purchased an old church on the island of Lanai. The church was built in 1937 and was recent renovated. It will reopen as a preschool for children who are on the autism spectrum and we are hoping to open for business this fall. Hannah played a huge role in this project and spent many days running around the place during its renovation. Unfortunately, Hannah left me on Christmas morning 2013 before she could open her presents. Hannah will not see the completion of the school but Cornerstone Educational Preschool will be her legacy and she will touch each child that walks through its doors. If you would like to learn more about Cornerstone Educational Preschool and make a contribution help to build upon her legacy please feel free to visit our website at http://www.cornerstoneeducationalpreschool.com.
–Nyle Dolera (Hannah’s father)
——————————————————————————————————————--
Mason Langford, aged 21 months
Mason came bursting into our world at 32 weeks, weighing only 3 lbs, 1.8 ounces. Our tiny fighter. With a few extra weeks in the NICU of growing, we were able to bring him home on oxygen and an apnea monitor. All was right with the world- we had a perfect little boy. On December 23, 2013 Mason had his first seizure. We had no idea what was happening and it was a terrifying event – later listed as a febrile seizure. His seizures became more frequent, about twice per month and without a fever. Just before his 1st birthday he was diagnosed with epilepsy. He didn’t let this condition slow him down.
Mason was full of light, love, and laughter. He was our pride and joy. His smile was contagious and his laugh could make your heart explode. He loved to read books, especially Thomas the Train. He had at least a dozen train engines that he called his “beep-beeps.” Sometimes the first thing he would say in the morning when I would get him from his crib was “beep-beep”, and his little feet would pitter patter down the hall to his toy basket. Our house was a beautiful disaster. We had so many hopes and dreams tied to him and knew he would do big, wonderful things. Some of our most fond memories with Mason are snuggling on the couch, going for walks in our neighborhood (he loved to look at the birds and trees), and going to the zoo. He loved to look at the fish in the aquarium at our local zoo. Every day we had him in our short 21 months was blissful.
Mason died in his sleep of SUDEP on February 13, 2015. We snuggled before his bedtime bottle and he went off to eternal sleep. We are trying to adjust to our new normal, dealing with the shock and guilt of not knowing, and living on without our sweet boy. He was our light. I know he is in Heaven with all the beep-beeps and bird-watching a little boy could ask for. As his Mama, I would love nothing more than to see his beautiful smiling face again. His personality brought out the best in me. We want to live a life that honors Mason and would make him proud of us. We miss our sweet boy dearly every day. If you would like to read more about our journey, please look at our online journal at http://www.caringbridge.org/visit/masonlangford.
–Matt & Amanda Langford (Mason’s parents)
——————————————————————————————————————--
Graham Brown, aged 25
Our son Graham Brown was born March 27, 1990. We lost him suddenly on July 15, 2015 at age 25 as a result of Sudden Unexpected Death in Epilepsy (SUDEP).
Graham lived with the challenges of severe autism, was nonverbal, had an intellectual disability, epilepsy, a mood disorder and was an XYY male (he was extremely tall at 6’10”). Although he had a very significant level of disability, his autism gave him a unique perspective on life. Graham had many endearing quirks. Although he could not speak, he communicated very well and was able to convey his feelings, perceptions and wants. He taught us so much with his love of life, his pure joy (even though it could get very noisy at times), his sense of humour and his unique “Graham-ness”. Graham had a very vibrant personality. He loved nature, especially water. He also loved colouring, cut and paste, his stuffed animals, puzzles and being read books. He was very happy to live on a farm at his group home where his uniqueness was accepted, accommodated and honoured.
Graham touched many lives, not just his family but the many professionals who worked with him. We all feel that Graham taught us so much. All of us miss Graham’s joy and exuberance and his wonderful sense of humour.
–Anne MacLellan & Neil Brown (Graham’s parents)
——————————————————————————————————————--
Ian Render, aged 24
Ian developed complex partial epilepsy at age 11. He quickly became seizure-free on medication. Epilepsy did not alter life much for Ian. He knew not to swim alone, and his family and friends knew what to do in case a seizure occurred. He suffered two seizures in 2014 - the only ones we were aware of in the 12 years prior to his death from SUDEP that November.
Ian lived a very full life. His easygoing nature and constant smile made him a friend to many. He was a proud Michigan State University graduate and was in his second year of teaching seventh grade mathematics after moving from Michigan to Denver. He was enrolled in a masters degree program. Between teaching and studying, Ian's daily routine was stressful and busy, but he was happy with his chosen career.
Ian's favorite book was Randy Pausch's The Last Lecture. We chose a quote from this book and made bookmarks for Ian's students and for those who attended his memorial service.
“We can't change the cards we are dealt, just how we play the hand.”
This is also a statement I want to follow in dealing with the loss of my son.
I was looking for answers within hours of Ian's death. On the Epilepsy Foundation's website, I read about SUDEP. I had never heard of this, and Ian’s pediatric neurologist had not mentioned it. Part of the information I read involved the North American SUDEP Registry (NASR). Immediately I wanted to be involved. Despite the two weeks that had passed since his death, I was able to donate some of Ian's tissues to help understand and prevent this horrible tragedy for others. I also gave consent for Ian's medical records to be released to NASR.
Once I contacted the Registry, I was called back within a day. A 45 minute interview followed to gather information regarding Ian's medical history. It was hard to do the interview so close to losing him, and I cried through parts of it. But I was treated with respect, compassion, and concern, and it was worth it to me to make Ian's life part of the SUDEP solution.
In closing, I encourage those with epilepsy and their families to contact the Epilepsy Foundation for information no matter how well their seizures seem to be controlled. I also encourage any of us who have lost a loved one to contact the SUDEP Institute for support and the North American SUDEP Registry. All cases of SUDEP can be enrolled in the Registry.
It is true that we cannot change the cards we are dealt, but some day information from our loss may prevent that SUDEP loss for another.
–Anne Render (Ian’s mother)
Read the full story here on the SUDEP Institute website.
——————————————————————————————————————--
Paige Nagy, aged 21
Paige developed seizures at the age of 2 and was diagnosed with epilepsy at age 4, more specifically GTC seizures. The first few years were pretty rough until her doctor found the right medication for her- then she was in good shape. She did pretty much everything kids her age did, took dance class, swam (with supervision), loved to play. When she got older Paige loved to hunt and fish too and loved to be in the woods with her pappy and uncle. Paige also had a love of travel and spontaneity and loved her family and friends more than anything. She was also a volunteer with our local performing arts theatre for many years and loved meeting the actors and groups who would come to perform.
Paige was wise beyond her years, an "old soul" one might say, as she loved ‘80s hair bands and ‘70s sitcoms and had a fondness for learning about her family history from the older generation family members.
Children and the elderly especially loved Paige which led to her career as a CNA for which she took great pride working at an assisted living facility. Sadly, this is when Paige's seizures reared their ugly head again which put a stop to her driving and affected her job. With great sadness, she had to give up her position as her seizures were now unpredictable. Through all this, Paige kept a positive attitude and didn't let it get her down. Sure, sometimes she complained about "this stupid epilepsy", but she'd bounce right back.
She had a boyfriend and a great circle of friends who supported her at all times. When she turned 21 in April it was a huge day for her and she had a smile on her face the whole day. We were all so proud of the beautiful young woman she had become.
Little did we realize that this would be the last big celebration that we would all be with her as 28 days later when I awoke for work, I found my baby girl on her bedroom floor. She was gone. At no time was SUDEP ever mentioned to us in the 19 years that she was having seizures. When I came across an article about it in our local epilepsy newsletter I was floored and started looking into it.
Our family is devastated by the loss of Paige. This past September, we held a golf scramble in her name and raised over $6,000 for the Epilepsy Foundation, which we plan to make a yearly event. We hope to also create a scholarship for the CNA program she graduated from. Of course, neither of these will ever bring our daughter back, but they will keep her memory alive and let people know her story.
–Julie Nagy (Paige's mother)
——————————————————————————————————————--
Sarah Kattan, aged 32
Sarah was diagnosed with partial complex seizures at age 10. Despite many medication trials up until her death on September 17, 2015, she was never completely seizure-free. Sarah also had developmental disabilities. She died from SUDEP while on a cruise with her mother in Europe. We were coming into Venice, Italy, one morning and she failed to wake up. I had never heard of SUDEP until the spring of 2015, even though Sarah had been under treatment for seizures since age 10. Once I learned that it existed, I asked her neurologist about it, and he told me that it's a risk for someone with uncontrolled seizures, but that nothing can be done about it except to try to control the seizures, which he was doing.
Sarah was generally a very cheerful person who is greatly missed by her parents, her sister Ilana, and her grandmother. She worked at a sheltered workshop called ROI, doing clerical tasks, and loved her job. She had good friends there and was able to watch movies, play games, and do other activities when they were not doing a job. She lived in a four-person group home run by a local organization called the Jewish Foundation for Group Homes that had 24/7 staff. She enjoyed going places with the other residents, including out to dinner, dance classes, swimming, and picnics in the summer. Sarah also loved playing the piano. She took piano lessons once a week for over twenty years and was good at reading music. She practiced the piano diligently every day at her group home.
One of Sarah's favorite things was to go on cruises with her mother. I took her on a cruise almost every fall, just the two of us. She loved getting off the ship to go sightseeing, although she wanted to hold hands very tightly so that she didn't get lost. She also always loved the food on the ship, and going to the spa to have her nails done. The cruise we had been on when she died went to Italy, Croatia, and Slovenia. We were in Slovenia the day before she died, which also happened to be my birthday, and had a wonderful guide who took Sarah to a cafe for hot chocolate and paid a lot of attention to her. I was devastated when she failed to wake up the next morning.
–Susan Kattan (Sarah's mother)
——————————————————————————————————————--
Mark Koncikowski, aged 36
Dr. Mark Koncikowski was a chiropractor, counselor, and devoted family man. Mark’s epilepsy likely began in childhood but his seizures were so far and few in between that his condition was misdiagnosed. It wasn’t until 2012, a year after graduating with his doctorate and shortly after opening a chiropractic office, that Mark’s seizures became more prominent. He was diagnosed with partial complex epilepsy. Mark was determined to remain as well as possible for the sake of his two young daughters, who were the light of his life.
Recalling his beaming smile when our first daughter Grace was born, he said he felt as if he had won the lottery. Mark and Grace shared a love of music, silly antics, theme parks, and lots of laughter. Our youngest daughter Veda has her dad’s intensity, his ever-searching eyes, and his thoughtfulness. Mark’s greatest gift to our girls was instilling them with empathy and compassion for others. Mark is also survived by his father, two sisters and their families, as well as his father and brother-in-laws.
Extending beyond our family and tribe of friends, Mark quietly touched the lives of many others. When his epilepsy complicated his independence, he returned to working as a counselor with the elderly and for the NYS Smoker’s Quitline. He was client-centered, an active listener, and a motivating guide for many to find a path to better health. In his youth, Mark worked with underprivileged children at St. Vincent de Paul Camp. He was a prolific writer and a self-taught guitarist. Several of his poems were published in local and national magazines. You could always find him strumming a new favorite tune.
In the early hours of October 30, 2014, Mark suffered his first and only grand mal seizure that preceded his death from SUDEP. We had concerns about SUDEP, but had been assured by Mark’s doctors that we didn’t have to worry about it because “he didn’t have that kind of epilepsy.” I knew that as a healthcare professional, Mark would have wanted to contribute to the collective understanding of SUDEP so I enrolled in the NASR study. We plan to honor his life by collecting donations annually on his birthday towards a scholarship fund to send a child in need to St. Vincent de Paul Camp, where Mark’s giving spirit remains.
-Jeanette Koncikowski (Mark’s wife)
——————————————————————————————————————--
Katie Hunter, aged 19
Katie Elizabeth Hunter was born May 20, 1991. In her nineteen years of life, Katie grew to enjoy many activities, including: singing, dancing, participating in karaoke, horseback riding, playing cards (especially rummy!), playing paintball, baking brownies and cookies, and watching movies.
Katie graduated in 2010 from Emmaus High School, where she was a member of the school chorus and participated in Special Olympics. Her favorite foods were pancakes, macaroni and cheese, and popcorn. She loved to go anywhere with her family, but her favorite place to visit was her uncle Jimmy’s beach house in Virginia.
Katie had beautiful brown eyes, a smile that melted hearts and an infectious laughter. She was so incredibly brave and kind to everyone. Katie was both innocent and wise. While she had difficulty learning, she was a great teacher. We all learned so much more from her than she ever learned from us.
Katie’s seizures began at 6 months old. Her seizures became uncontrollable and she was eventually diagnosed with Dravet’s Syndrome in 2009. It was then we were told she was at high risk for SUDEP.
Katie was being evaluated to determine if she was a candidate for a corpus callosotomy—a type of surgery that separates the two hemispheres of the brain—the week prior to her death. It was hoped this procedure would improve her quality of life.
Katie passed away due to SUDEP on October, 18, 2010. She is survived by her parents, Robert and Angela Hunter of Allentown, PA; mother, Lisa Hunter of Lehighton, PA; brothers Scott, Jesse and Jordan; grandmother, Maryanne Balogach; and many loving aunts, uncles and cousins. Katie’s family loves her very much and misses her terribly.
-Robert Hunter (Katie’s father)
——————————————————————————————————————--
Michael Meyer, aged 36
My son, Michael had his first grand mal seizure while a student at State University at Buffalo. After trying several medications his physician finally found one that controlled his seizures. He would be seizure free for 3-4 years at a time. He graduated from SUNY Buffalo with a Bachelor’s Degree in Civil Engineering but soon realized that working on construction sites was dangerous. He decided to make a change and enrolled in Touro College where he earned a Doctorate Degree in Physical Therapy. He worked at a nursing home and loved his job. He was such an easy going, kind-hearted person. We were so proud of him. He never let epilepsy stop him from pursuing his passions. He loved camping, softball, playing guitar and going to New York Yankee games. He loved his family and friends and never missed an opportunity to celebrate a birthday or anniversary.
Michael got married in 2011 and moved to another town. Shortly afterward Michael had a seizure and was admitted to a hospital close to his new residence. This prompted him to change his physician to one affiliated with the hospital. This new physician changed his medication. Michael began to have daily or weekly seizures. He was no longer controlled by one medication. In 2011 he agreed to the insertion of a Vagal Nerve Stimulator. This decreased the severity but not the frequency. He finally switched to a physician who added his old medication and that seemed to work. This doctor was successfully weaning Michael off the other drugs and he had been seizure free for over a year. We were so optimistic. However, on July 5, 2014 I found my son in his bed. He had passed sometime in the early morning. He was 36 years old. I am a Registered Nurse and I knew nothing about SUDEP. It was after speaking with his doctor that I learned about SUDEP and the registry. We miss him so much.
-Linda Meyer (Michael’s mother)
——————————————————————————————————————--
John Paul Popovich, aged 19
John Paul was our oldest of three children. He had a seizure at age 7, which the doctor diagnosed as a benign rolandic seizure. Yearly EEG’s & annual neurologist appointments ensued for the next 10 years. In the Spring of 2014, at age 17 and now a high school junior, John Paul had his 2nd seizure & was put on low dosage medication. In the Spring of 2015, he had another seizure, at which time medication was increased. We were assured his mild form of seizures were under control, and not to worry. This past December, John Paul had just completed his first term at the University of Virginia and was home for the holidays. Three days later, our son passed away, from what we would later learn was SUDEP. Like all other families who have gone through this tragedy, the loss of a child has been devastating and inextricably changed our lives forever.
Growing up, John Paul was an outgoing, happy, and loving young boy who had a great sense of humor. He had a wide circle of friends, loved the water and Disney World. During his teen years, he developed a strong intellectual curiosity about the world around him. He was a voracious reader on a variety of topics, but particularly loved Stephen King novels. He was knowledgeable on a wide-array of topics, including politics, economics, history, and math. He was an accomplished swimmer, breaking the Virginia high school state record in the 200IM as well as several records in high school. Though he finished only one term of college, he loved the University of Virginia. The stimulating social environment and rigorous academic environment which college offered had put our son on a trajectory for success in life. But above all else, he matured into a kind and decent young man who valued family and friendships. To talk with John Paul, one would never know how accomplished he was for such a young age. He was comfortable in his own skin, and treated everyone equally, with kindness, compassion and respect. And we loved him.
SUDEP cut short our son’s promising life ahead of him, as it has for many other families. Ironically, had our doctor made us aware of SUDEP beforehand, John Paul would have been the first person to immerse himself in this subject and learn what he could about this silent killer. Candid discussions about SUDEP between doctor and patient need to occur. The medical community mindset of silence must change.
-John & Karen Popovich (John Paul's parents)
Kevin Blackwell, aged 42
Kevin Michael Blackwell was my wonderful husband, Samantha’s amazing Daddy, and Karen and Tom’s treasured and only child. He was a firefighter, a critical care paramedic, builder of the best neighborhood Halloween Haunted Houses, helper of everyone, and our own personal “Mr. Fix It” (His unofficial nickname was MacGuyver). He was a great friend, a good person, and half of my whole heart.
Kevin battled his body and the limitations it placed on the life he wanted to live every single day. Kevin fought, with every ounce of his stubborn nature, the seizures that wrecked his sleep and left him feeling like he’d been in a small car wreck all too often, and the type 1 diabetes that threatened his career and his dreams regularly. He never missed medications, was careful with his health, and gave everything he could. He had a Vagus Nerve Stimulator (VNS) inserted, which helped his recovery, but seemed to have no effect on stopping these “problems,” as we called them. He never stopped fighting. In 2011 he survived a horrible car accident where we were told he would not live to see morning. However those doctors underestimated the size of the fight in this dog and Kevin and went on to earn his Bachelor’s degree in Biology and Chemistry, start nursing school, get married, buy a home and welcome our wonderful daughter over the next four years.
On January 30, 2022, Kevin spent the day hanging out with his family doing basic suburban tasks, going out to lunch with his wife and kiddo, going to the grocery store, and taking care of odd jobs around the house. We watched a movie and talked about how we were coming up on 9 years of marriage and 16 years together. That night he went to sleep and he never woke up.
We had heard of SUDEP, and that he was at higher risk for it. We were never told that he checked every box on the list. We were never told he was always on a crash course for this ending. We were never told that when people die of epilepsy, that this is all too often exactly what happens to them. What could we have done if the doctors and specialists who treated him were better educated about this phenomenon? How much more time could he have had if the medical community knew more about this and could have advised us better? Maybe his daughter would have someone to send a Father’s Day card to this year. Maybe we would have toasted our 9th wedding anniversary this month. Maybe his parents would not have had to bury their only child.
We are hoping that by participating in this registry, the information it generates helps make it so that more Dads live to read Father’s Day cards from their kids, that more husbands wake up with their wives, and that more families do not lose half their hearts to this crushing phenomenon. We are participating so that we can have our own say in whether we were ready to lose our Kevin. Thank you.
- Eileen Collins-Blackwell (Kevin’s wife)
Christopher Tucci, aged 27
Christopher Flynn Tucci, 27, of West Nyack, NY passed away unexpectedly on October 22, 2023 from undetermined causes. He was perfectly healthy, thriving, and living a completely normal and accomplished life until he disappeared on us. There is no other way to describe it- he was here one minute and gone the next.
He suffered from Rolandic seizures from the ages of 10 to 13, but he outgrew them. His mother was able to breathe a slight sigh of relief as this period of his life faded further and further into the background. She, and the rest of his family, always worried about his history of epilepsy, but those fears seemed more and more unfounded as he had no known lasting issues or concerns from the epilepsy- until he suddenly died.
He spent the last day of his life, October 21, 2023, with his friends having the time of his life at a golf simulator and then watching football at his friend’s apartment. He went to bed that night, got up to use the bathroom, and collapsed on his way back to bed- so suddenly that he didn’t even put his hands out to catch his fall. From what was discovered, they think his heart stopped immediately. By the time his friend found him it was too late. The details remain vague and inconclusive. For no reason any scientist, doctor, or expert could find his heart stopped.
His life story is of equal importance, and here it is: Christopher was born on February 12, 1996 in Brooklyn, NY to Eileen and James Tucci. The youngest of their four children, he was their “cherry on the cake of life”; that absolute unexpected little treat on top of it all. His short time with us was filled with living life to the fullest and accomplishing more than most people do in a full lifetime. He did it all: whether that was traveling with his brothers, being the only one in the family to stand up to his big sister, skiing, playing guitar and piano, taking singing lessons, studying jiu jitsu, rock climbing, acting, surfing, or running a marathon. He spent time volunteering with special needs children teaching them how to ski with the Adaptive Sports Foundation in Windham, NY and Breckenridge, CO. Never one to brag, he did all of this humbly and quietly. He also accomplished a lot academically. After graduating from Pearl River High School in 2014, he went on to graduate from Fordham University in 2018 with a degree in physics and engineering. Post-college he taught himself data science and was most recently working as a data analyst for Meta. He was the epitome of youth and health, which makes this all the more tragic. He is survived by his loving parents, Eileen and James, his 3 big siblings: Kate (Pete), Michael, and James (Gemma), his adoring nieces and nephews (Natalie, Thomas, Caroline, and James), and a core group of friends that were more like family.
We continue to fight for answers and against the dark place our grief has brought us to, because in the words of Christopher, “This life will not be easy, but I can make it worth it. I need to live every day now in a way that makes me proud. I need to be able to look back at each day and be like, I crushed it. This will likely require everything I’ve got, but I have to do it. Every day, I will fight this battle with gratitude. This is what I was put here to do.” This entry was found in a journal of his after his passing. Little did he realize how much we would need his guidance and wisdom to keep us going.
- Katie O’Brien (Christopher’s sister)